I finally have been able to get an audience with a radiation oncologist at the University of Minnesota. She has heard about the use of RT to treat Dups and Ledderhose, but has never done it. I am planning on bringing a packet of information for her, and I was about to compile it when it occurred to me someone may have already put such a packet together. If so, can you share it?

I copied a post I just made in another thread with some links to Pubmed, just below.

Not an info packet, but has the studies. Check under the "Dupuytren's disease", "literature" links at the left, where Wolfgang also posted a link to a book reference you can provide also. I hope that helps a bit.

I am facing the same issue here in Canada and as a result of not being able to obtain treatment here and the excessive cost in the U.S. it was an easy choice for me to go to Germany to see Prof Seegenschmiedt.

As long as your oncologist is trained and uses MRI or CT to map the area, you should be fine. They treat many different tumours, of which this is just one. Ask questions up front and make sure you're in good hands. If you still have doubts then you have other options, including experts like Prof S. in Hamburg. Good luck!

Allisun,

Here are three published clinical studies I found online at Pubmed, one comparing two different treatment protocols and the other two, long term studies:

2010: http://www.ncbi.nlm.nih.gov/pubmed/20127225

2001: http://www.ncbi.nlm.nih.gov/pubmed/11172962

2001: http://www.ncbi.nlm.nih.gov/pubmed/8960518


They all use the treatment protocol of 3GY X 10 in two series of 5, separated by 6-8 wks. However one also compares 3GY x 7 over 14 days finding no significant difference. It depends on stage with stage N showing generally 80-90% long-term success and then declining as DPC stage advances. I doesn't seem that they have studies for rates of success with one treatment so I'm curious as to why your doctor made that choice.

I just returned from Hamburg and had treatment with Prof Seegenschmiedt for DPC of the left hand. I had 3GY x 5 days. However, I was told to wait a minimum of 3 months before the second course and he indicated it was okay to be 4 months. That differs from the period of 6-8 wks in the studies. I suspect that with his vast experience over 20 years or more, he may be basing it on observed clinical outcomes as he was an author of two of the above studies. I trust his judgment and clearly we may not be aware of what they've observed and not published while treating this over the years. I met another patient from the U.S. who chose the 3GY X 7 days. Prof S. advises the 5 x 2 plan if at all possible to minimize side effects and max benefits, but both are used.

quinnt01:

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I finally have been able to get an audience with a radiation oncologist at the University of Minnesota. She has heard about the use of RT to treat Dups and Ledderhose, but has never done it. I am planning on bringing a packet of information for her, and I was about to compile it when it occurred to me someone may have already put such a packet together. If so, can you share it?

Email Diana. She compiled a packet that she brought to her GP/radiologist so that he could convince her insurance company to pay for treatment. Whatever she had in there worked because they paid for it. While she might not able to literally send you the packet, she would I believe advise you as to what she included in it.

I had a minor amount of research that I took with me to my appointment. I wanted to make sure that even thought they said they knew how to treat it, that they were following the exact protocol I wanted. Since I was nervous it also helped me to remember questions to ask.

Lori

Hello Quinnt01. I'm also interested in RT treatment at the U of Minnesota. I spoke with Dr. Katie Dusenbury there and she said she has treated one patient to date. I assume that was you? Just wondering what your experience was like, how long since your treatment and of course, has it helped you? Hopefully all went well. Thanks for any information you can share-

I read your post on the other forum. It's very encouraging to hear about physicians open to RT. I had also checked with Mayo Clinic and came away with the same sinking feeling. They were no help.

I've had DD in my right hand for 13 years. Two surgeries under my belt and possibly a third on the horizon. My pinky is contracted again to 90 degrees. I tried NA with Dr. Rizzo at Mayo but no success. So now while I'm deliberating about my R hand, I notice a new nodule on my L hand. Everything I've read on this site points to RT for this new problem. I'd really like to retain one "good" hand.

I have no signs of LD yet but I continue to be on alert. I think you did the absolute right thing by going to the U of M. Had your ducks in a row and found a great doctor willing to listen. It's also good to know she's offered to go to bat with the insurance companies for treatment approval. I have Health Partners and have not tested those waters yet.

Thanks again for your help and the best of luck Tom. Keep us posted on your progress.

Bill